I hope you bet on me!

I spoke with the neurologist on August 5th. He walked in and asked Jared how he was doing without waiting for a response.

Thinking back I realized the last time they saw Jared his Dilantin levels had been extremely high and he was lethargic. The seizure specialist called me after that appointment and changed the dose. Follow up blood work done at the local clinic revealed everything was normal a few weeks later. They had never seen Jared when he wasn't lethargic.

So when Jared mumbled "I'm good how are you?" I interrupted the doctor and translated his response. I think that threw the doctor off because he was silent for sever seconds before saying "okay".

I told him Jared had been doing well, no seizure activity, and that I wanted to take him off Dilantin. I went on to explain that I thought the drug was effecting Jared in negative ways and that he would function much better without it. I told him that I thought Jared was suffering from Nystagmus and that Dilantin was making it worse.

He told me that we could take him off Dilantin to respect my wishes. He warned me of the risk of seizures and we agreed that we would return if I suspected he was having any.

The doctor tried to look into Jared eyes and see the rapid movements when he focused. I tried to explain that it only happened when he was tired and Jared wasn't tired.

It's frustrating to deal with the doctors. They expect Jared to hold his eyes open as they blind him with lights and poke around his face. I know they need to do those things to help him, but they should understand you have to do things a bit differently with someone as disabled as Jared. Even more they should know that every TBI is different and the possibilities are endless. Jared (or anyone with TBI) will never fit into that round hole of text book symptoms and diagnoses.

In the end I got what I wanted. The doctors didn't side with me completely but were willing to admit I could possibly be right.

They want a CT of Jared's head because he's had some headaches and they want to make sure he hasn't had any changes with his shunt or ICP. They suggested several medications to help with the headaches, one of them was yet another seizure medication. I declined I told them I wanted to see Jared unmediated for a while. We agreed.

August 18th we returned to the VA to have Jared's Baclofen pump refilled. Jared had an aggressive episode as he was getting out of the car. I was actually happy Jared's brother was there to witness the event, until then no one could understand what I had been telling them.

I told the doctor Jared was still complaining of lower back pain and he had localized it to the area where the catheter enters his spine. I asked the doctor if we could check things out with a CT or MRI. He told me we could order a CT because the MRI would mess with the pump. Even though I told him he had an MRI since the pump was placed he still wanted the CT.

This doctor ordered a spine X-ray to locate the catheter and pump so he could order the correct CT scans.

Later all hell broke loose in X-ray.

The tech came out and got Jared and told me they would be back in a few minutes. I told her Jared had some communication issues and I wanted to go with them, she agreed.

We had to move Jared to the X-ray table, I did the transfer with no problems. She needed Jared to hold his arms this way and hold his head that way. I showed Jared what to do because he was a bit confused. Things were great until she needed him to lay on his side.

I rolled Jared over onto his left side thinking he could steady himself with the right arm. Jared instantly flipped out and started hitting me. He grabbed my hand and bit me hard. I kept asking Jared "What's wrong?" and he moaned "My hip!".

His hip was digging into the hard table and it was hurting him. I rolled him to his back and asked the tech for a sheet or towel. She grabbed one out of the cabinet and handed it to me. This was the first time I had looked at her and I could see she was a bit freaked out.

We rolled Jared onto his other side and he was tolerant with the towel under him. The tech told me "Thank you for helping, you're so good with him." I laughed and responded "Now you understand his communication issues.".

I was a little shaken as I wheeled Jared out to the lobby. Jared's brother was waiting on us and I told him what had happened. I held up my hand to show his brother and saw it for the first time. I had a perfect bite mark on the back of my hand. I didn't realize it had been that bad. It was starting to swell and turn red. As we walked to the car sweat stung a cut where Jared's eye tooth had broken the skin.

I drove home a little heart broken realizing Jared was becoming more dangerous as he recovered.

9 comments:

  1. I will continue to think of you. I taught a child with a TBI and I cannot imagine what you are going through. God Bless you

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  2. I found your blog by following your link on BBC. I wanted to share with you a story that my friend wrote about her life. You are such a strong woman and I can't beleive all the progress your husband has made. Please continue to have hope and don't give up...

    My friend's story...One day I was fighting with my high school, in Mississippi, convincing them to let guys be on the cheer squad; the next thing I knew I was in a hospital bed and couldn’t even move. I was told I had been in a severe car accident that resulted in a traumatic brain injury (TBI). I wasn’t able to talk, walk, eat, or even remember who this lady was that claimed to be my mother. I was in a strange place, but it was full of people I knew except they were from all different places and times throughout my life. My step-mom and Dad were there and they were from Colorado (I lived in Mississippi at the time). My sister and her family were there too, and they lived in Texas. To top it off, my old gymnastics coach who had moved to Jackson (a town 200 miles away from Saltillo) was there! It turned out that they were all there to see me. What did I do that was so great? This was definitely a dream, but how would it end?? This place wasn’t my house or a place I’d ever been or even seen before.

    Soon I realized I couldn’t move, and there were strange people who came in to move my limbs for me. I was given several tests, daily, to see if my cognition had improved. I was asked things like, “If you look out the window, is it night or daytime?” I was asked what year it was and who the president was. I was asked to do simple things like tie my own shoe, and to my surprise, I couldn’t do it! I was scared!! I had to find out if this woman who called herself my mom really was my mom. To figure this out, I had to be mean. I knew I could do anything to her; if she was really my mom, she could take anything. My mom was superwoman. In the process of determining if she was my mom, I dislocated a finger or two of hers and bit her hard enough to draw blood. I went on by interrogating her about everything. I told my so called mom that I didn’t like this game and didn’t want to play it anymore. I was told several times that I had been in a severe car accident, but couldn’t grasp the idea of being hurt. In disbelief, I asked who was with me in the accident. I was told a girl’s name that I hadn’t ever heard of, so I knew, that it was everybody else that was crazy. It wasn’t until a while after I got home that my mom convinced me that she was my real mom, and it still wasn’t until I had friends visit me, who could tell me about my past (which I thought was present), that I realized I had really been in a car accident.

    Through the beginning stages of the healing process, people at Church would shake my hand and I would, nonchalantly, bite or flip them off. At home when people would come to visit, I would show off and I mean that literally, my aunt would say, “Kimi, you’re as naked as a jaybird.” I didn’t care. Even to this day I can’t remember the two years before the wreck, but I think that it is my body’s way of protecting me from the trauma. When reminded about certain events and the people that were around, the memories vaguely resurface, and I still sporadically regain crazy memories. This whole healing process is much like growing up, all over again, anticipating what each day will bring, but I’m just like everybody else in the sense that I’m learning too. I am just learning everything all over again.

    This girl was 16 when this happened. I met her in her early 20's. She was still wheelchair bound and had very slow, hard to understand speech. Today, 4 years later, she has graduated college and is getting her masters in psychology. She is walking, she is talking, she is living on her own, and she is dating. Just because it's a long road to recovery doesn't mean it won't be worth it. I am praying for you and your husband!!

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  3. Jennifer I found your story through BBC. I was intrigued by a weird titled post and after reading the post I was confused big time. I went on reading everyones comments to find out what I was missing. I read how amazing you were and that you were in their prayers. I read you are strong and caring but of course I was still confused. I notice the link in your signature and was curious. I opened it up and started to read. I was hooked and heart broken. I had goose bumps on my arms but I could not look away. Your story is so captivating. I spent the entire day at work going back to your blog to read just a little bit more every chance I could. I read from day one to the most recent update and I am truely AMAZED. The love you have for your husband and family is so heart touching. The way you have advocated for him and stayed so strong. You have truely touched my life and showed me loving caring and AMAZING people do exist. you will forever be in my thoughts and prayers.

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  4. So I read your blog off from BBC and I can honestly say you are an amazing person. If the world had more people like you it would be a great place. As I read your blog I bawled my eyes out. My dad was in a motorcycle accident when I was still in school. He somehow went off the road when he was almost home. We heard many different stories on what had happened from the police, at least thats what I heard. The police came to my mothers house, where they had told her my father had been in an accident and that we should probably go say our final goodbye's as they didnt know or think he would make it. We rushed to the hospital as he too was airlifted to a bigger hospital. He broke his neck in seven places, crushed his arm and whatever else. I really cannot remember. I was young, it was horrible. My dad has made a full recovery though. I mean he has little problems here and there, but he is able to drive, work, be a normal person. He does have little quirks, like he became allergic to his own sweat after the accident, and he thinks "people" are out to get him. But not to a irrational state that his life cant go on. And those things have faded off in the years. He's not burning his mail and that stuff anymore. At least not that I know of. He sold his one house bought another and lives by himself with his dogs, and has a few girlfriends here and there. I can even begin to imagine what you are going through. I am so sorry for what happened. Just remember that God doesnt give you anything you cant handle. You are by far one of the strongest people I have ever heard of. I thought about not sending you a message, but could only think that you could not be told how GREAT of a person you are enough. I will pray for your family, I hope to hear more news of recovery from you. You are an amazing person and dont let anyone tell you any different. Just hope that you get many more messages, and keep faith and hope. And I hope messages like ours, help you to see how much God uses people like you. People with your loving caring nature. Dont ever forget how amazing you are, the effort that you have written about is great. I hope to read more on your blog soon.
    God Bless You.

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  5. Jennifer,
    Thank you for sharing your story. I found your blog when I was on BBC. As many others that have read your blogs, I was also hooked and heart broken reading everything that has happened. I am going to continue to follow your blog and read about your husbands recovery. You and your family are in my thoughts and prayers. I hope the best for ya'll and a wonderful recovery in the end.
    God Bless.

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  6. Jennifer,

    Like most people seem to be saying, I also found your blog on BBC. I was immediately hooked and read through the whole story here at work (oops!). I cried, I laughed but mostly I kept saying in my head "Wow. What an amazing woman, wife and mother.". I hope you know that you are such a strong person and I don't think you could ever be told "you're amazing" enough. I will be adding your site to my "favories" and check back on his progress. God bless you all.

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  7. god bless you and your family ... we would love an update. you're amazing, and your blog touched me. my prayers go out to jared, you, and your babies. how courageous you are. <3

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  8. Would love an update on how you are all doing... Keeping you and your family in my thoughts and prayers.

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  9. I read your entire blog, I can't even imagine what you have gone through. Stay strong and please update here or on BBC and let us know what is going on.

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